ableism – Rooted in Rights

The Revolution Will Have Alt Text

Posted on September 11, 2025January 14, 2026 by Izzy Bailey

“If you can’t run a mile without stopping, you’re not ready for the apocalypse.”

When I read this quote on a friend’s Instagram story, it infected my mind for weeks. I had stress dreams about getting lost in alleyways, trapped for eternity in an endless maze. As a blind guide dog handler, I rarely travel without assistance. Bright, my dog, flunked out of the running guide unit during training; I’m not exactly marathon material either. If survival depends on sprinting, I probably won’t make it very far.

But the real issue is not whether I can run. It’s the version of survival that our hyper-individualistic culture demands: fast, isolated, physically strong, and self-reliant. I do not see myself as the main characters in the zombie apocalypse stories. I see myself in those quietly working together behind the scenes, the ones who survive because they have someone to call and someone to care for.

Disabled people already know how to survive in broken systems. We do it all the time. We adapt, we plan, we rely on one another. I bring eggs from my chickens to the neighbors. They give me a ride to the pharmacy when my transportation falls through. That’s not charity; it’s how we both get through.This kind of mutual care is what the disability justice movement calls interdependence, and it challenges the myth that any of us survive alone.

I prepare in other ways, too. I chaos garden. I buy flour in bulk. I label jars of preserved food with puff paint braille dots. But even the best-stocked pantry is not enough if I can’t access emergency alerts or mutual aid networks. I can’t volunteer if the sign-up sheet is a graphic with no alt text. I can’t join the ride list if it’s saved as a JPEG.

These are not small issues. In a crisis, they decide who gets help and who gets left behind. Inaccessible communication in emergencies shows how even protections promised by the ADA fall short when digital systems are not designed with us in mind. Even our own movements forget that access is the keystone to survival, not something to address only when approached by the squeaky wheel.

Sometimes disaster prep means emailing the local transit board because their annual reports aren’t screenreader compatible. Sometimes it means advocating for plain language in public health alerts. It means pushing for town halls to be held in buildings with accessible entrances. It means organizing to add image descriptions to the work of the photo-journalists documenting an ongoing genocide. These are acts of care. They keep the circle strong.

I’ll admit that my go-bag is lacking. But I do have a mental map of who can show up in an emergency, who needs support, and who might need a couch if they can’t make rent. I know who goes out of their way to make their digital content accessible. And I know who has space in their fridge if the power goes out. This is what safety looks like for me.

No, I cannot run a mile without stopping. But I know how to take care of people—and I know who will take care of me.

Izzy Bailey (she/they) is a social work graduate student at the University of Maine who works at the intersection of disability justice, public health, and outdoor equity, drawing on her lived experience as a blind guide dog handler. She serves on various boards and councils including Maine Organization for Blind Athletic and Leadership Education (MOBALE) and the Guiding Eyes Graduate Council. Izzy is passionate about building more accessible communities across Maine and beyond.

About Rooted In Rights

Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

Doing Harm: How The Remnants of “Hysteria” Impact Chronically Ill People

Posted on December 5, 2024October 7, 2025 by Anonymous

EDITOR’S NOTE: We want to acknowledge that, like many societal institutions, scientific and historical research often leaves trans, non-binary, and gender non-conforming people out, erasing our identities and disparities. As a result, though attempts have been made to use language that is as inclusive as possible, articles and essays like the one below are often forced to use language that is limiting to accurately convey the available data as it has been published (whether historical or present-day). But our commitment to highlighting and uplifting trans, non-binary, and gender conforming people and their work remains.

The word “hysteria” inherently evokes misogyny. Deriving from the Greek word for “uterus,” it was used in ancient Greece as a diagnostic label for women with symptoms ranging from dizziness to paralysis and menstrual pain—all of which were attributed to a “wandering womb.” Throughout history, the label was given to women who were perceived as unreasonably ambitious, attention-seeking, neurotic, or sexually dissatisfied. In Freudian times, it eventually evolved to refer to a mental disorder thought to primarily affect women, causing physical manifestations.

In an age of medical advancement and greater attention to gender equity, most of us would consider this gendered catch-all diagnosis for unexplained ailments to be unthinkable. But chronically ill people of marginalized gender identities, and just about anyone with a chronic health condition that disproportionately affects women, can attest that modern medicine hasn’t progressed as far beyond the hysteria diagnosis as one might expect.

I’ve crossed paths with countless people whose disabling physical symptoms were initially attributed to a variety of psychological explanations— from anxiety to repressed trauma. Many were given diagnostic labels that were essentially equivalent to hysteria by a different name, before years later receiving correct diagnoses of chronic illnesses that disproportionately affect women, like endometriosis or postural orthostatic tachycardia syndrome (POTS).

I, myself, can vividly recall sitting in a doctor’s office exam room at 14 years old, desperately hoping that this visit would be the one to finally provide an explanation for my severe abdominal pain that had suddenly begun months prior and never dissipated. Instead, the gastroenterologist declined to order any tests, impatiently telling my mother that anxiety is common in teenage girls and recommending psychiatric medication.

As my health declined further in early adulthood, I learned that chronic illnesses like myalgic encephalomyelitis (ME), a neuroimmune disease that mostly impacts women, have been especially plagued by these stigmas, and people with ME are still forcibly institutionalized in psychiatric facilities around the world. As the COVID-19 pandemic has brought similar infection-triggered chronic illness experiences into mainstream public discourse, it’s been disturbing to witness some healthcare professionals speculate that Long COVID is a form of “mass hysteria,” despite an abundance of scientific evidence to the contrary.

These mislabellings are harmful, not because there is anything shameful about the possibility that someone could be living with a psychological condition. Rather, what is shameful is that women and other people of marginalized gender identities are still treated as unreliable reporters on our own bodies. It is harmful because this gendered misdiagnosis obstructs access to necessary medical care, disincentivizes biomedical research on certain diseases, and even prevents us from seeking support for comorbid mental health symptoms out of concern that doing so could further damage our credibility.

In her book Doing Harm, Maya Dusenbery explores the self-perpetuating cycle of bias and scientific neglect that keeps us stuck in the dark ages of gendered medical gaslighting: “Women’s symptoms are not taken as seriously because medicine doesn’t know as much about their bodies and health problems. And medicine doesn’t know as much about their bodies and health problems because it doesn’t take their symptoms seriously.”

In order to truly leave the days of the hysteria diagnosis behind, we need to address what Dusenberry refers to as the “knowledge gap” and the “trust gap.” We need more research and medical education on conditions that disproportionately affect women. And, we need a radical deconstruction of the gender biases in healthcare that perpetuate the dismissal of our pain.

Anonymous (she/her) is a nonprofit professional and chronic illness advocate based in New England.

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Fired During Accommodations Application: Reflections from A Black Autistic Worker

Posted on November 2, 2024March 12, 2025 by A. Tony Jerome

One of my greatest dreams is financial security. Not just so I can live my life well, but so I can dream about living. Period. Also, financial security almost guarantees health insurance; my medication costs $300-1,000 per month without insurance.

When I couldn’t be claimed on my parents’ plan anymore (which is in itself a privilege), all I could think whenever I clocked in at any job was, “I get to stay in therapy. I get to take my meds. I get to keep breathing.”

Four years ago, I quit my customer service job because masks weren’t enforced. Thankfully, I found an apprenticeship that would start within two months and allow me to get my Associate’s degree and work virtually.

I spoke at a global panel on invisible disabilities about four months into the second year of my apprenticeship. Colleagues reached out to me afterwards asking for resources and looking for support. I felt like I’d finally figured out a place where I could fit in at this company.

Three months before my scheduled graduation from the program to full-time employee, I came across a work email that mentioned an institution known for child abuse. I had a PTSD flashback and requested the rest of the day off. I’d never done this before—tell someone the truth in a way that could help me. But this time I asked for help. In hindsight, I feel like I made a terrible mistake.

Less than a week later, I was put on probation. Then I got COVID. I struggled with tasks that I’d already needed help with in the past; COVID brain fog and exhaustion made it worse. I explained to my bosses that I needed more time, more help. They encouraged me to take care and get better. My career counselor, God bless her, helped me update my accommodations request (closed captioning, extra time to respond) and apply for FMLA (Family and Medical Leave Act).

In 2023, across all levels of education and age groups, people with disabilities were much less likely to be employed than their counterparts without disabilities. As an organization that played up its commitment to diversity and inclusion, I’d hoped that there’d be more understanding as I attempted to find my place at work.

But, as shown in many companies, “diversity and inclusion” is more of a box to check off than a commitment to fulfill between employer and employee. This is extremely dangerous as Black disabled people are among the communities recorded to have high unemployment rates. Coupling that with anti-Blackness and misogynoir can make living day-to-day extremely difficult, if not near impossible.

Less than a week after I had gotten off the phone regarding my FMLA application, I was fired. When they pulled me into the Teams meeting to fire me, they didn’t even alert my counselor so that she could support me. It wasn’t the worst they could’ve done. At least they remembered to turn the captions on.

Refusing to adhere to a person’s accommodations eliminates a person’s autonomy, making it difficult—if not impossible—to show up in a space. I couldn’t show up for work because I was spending energy meant for accomplishing tasks to advocate for my right to exist.

I’ve advocated for myself and others in work situations before and I’m tired. I’m tired of being seen as less than (not just due to disability, but race, gender, and sexuality–which are inextricably linked to and inform my disability). I’m tired of doing the work to be seen whereas others are treated as human without a second thought. I’m tired of my work being punished and I’m tired of being punished when I’m too burnt out to do the work necessary to be seen.

I’m something beyond exhausted and have been for years. And still…it’s not enough. I write, advocate, and show up and the world still tells me and my communities that we aren’t enough. What else can I possibly do?

A. Tony Jerome (they/them) is a Black, autistic multi-disciplinary artist. An Aardman Academy Stop Motion I graduate and 2024 Game Devs of Color speaker, you can find their work in The BreakBeat Poets: Volume 2, baffling magazine, and Freezeray Poetry, among others. They’re here to do good and do gay. You can find them at atjscreams on Bluesky and on their website.

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True Advocacy for Dwarfism Awareness Month

Posted on October 31, 2024March 12, 2025 by Erin Pritchard

CONTENT NOTE: contains derogatory slur related to community

October is Dwarfism Awareness Month. Not many people know this, but you can be forgiven for that; there are so many days and months that are now dedicated to raising awareness for certain causes. For example, October is also Down Syndrome and ADHD Awareness Month.

But are these events actually effective? Or are they token gesture events that are forgotten about by the end of the month? The derogatory representations, such as “midget” wrestling continue and the inaccessible buildings still stand. Thus, if we want true awareness, we need to fight any inequality—no matter how uncomfortable it may make us—all year round.

During Dwarfism Awareness Month, my social media feed will become inundated with posts trying to raise awareness about dwarfism: from stating that “there are over 200 types of dwarfism,” to posting pictures of trident hands, a common feature for people with achondroplasia. Whilst it is awareness, it does not do anything to change attitudes towards dwarfism.

A picture of a trident hand will not change society’s perception of dwarfism. Furthermore, what is the point of telling people there are 200 types of dwarfism? It will not change attitudes or challenge inequalities in society that people with dwarfism regularly encounter.

Maybe, for someone partaking in dwarf tossing, they might wonder which of the 200 types the person they are tossing has. Furthermore, not many other people will see these posts, except for people with dwarfism like me. What others see are mostly derogatory representations of dwarfism that are prevalent throughout the rest of the year and shape how we are perceived.

Aside from these posts, Little People of America (LPA)—the world’s largest association for people with dwarfism—has designed a dwarfism pride flag. The flag is a combination of various shades of green blocks with a blue spine down the edge. LPA’s online store sells all sorts of merchandise specifically featuring the new pride flag, which you can buy to show your support for dwarfism awareness.

But how does a green flag promote awareness? Like the various LGBTQ pride flags, will it just be adopted by companies as a token gesture of support? An easy way to show support without tackling any of the injustices we experience? If I use the tote bag for shopping, will it mean that supermarkets will suddenly consider my access needs? Or will it stop other customers from pointing and staring at me? Of course not.

We need to be raising awareness throughout the year—challenging misconceptions that have been around for centuries, which cannot be done with flags, t-shirts, and pictures of trident hands. So for Dwarfism Awareness Month, I won’t be doing any of that because it’s ineffective. Instead of the same routine, we need to be advocating for good examples of representation, like Kiruna Stamell in the BBC drama “Doctors” or Peter Dinklage in “Game of Thrones.”

And, perhaps most importantly, we need to be holding society accountable for the harm caused to our community, like the work I’ve done campaigning for various confectionery companies to drop the slur “midget” from their branding. Another great example is the work of Angela van Etten, who has worked to ban the “entertainment” practice of “midget tossing.” Real change comes from advocacy that challenges the status quo. Real activism comes from calling out and challenging everyday inequalities.

Dr Erin Pritchard (she/her) is a senior lecturer in Special Education Needs (SEN) and Disability Studies at Liverpool Hope University. She is also a core member of the Centre for Culture and Disability Studies. Her work specialises in cultural representations of dwarfism and how they shape social attitudes towards people with dwarfism. Her books include: Dwarfism, Spatiality and Disabling Experiences; Midgetism: The Exploitation and Discrimination of People with Dwarfism; and Dwarfism Arts and Advocacy: Creating Our Own Positive Identity.

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Working While Schizophrenic: Becoming Out and Proud

Posted on June 11, 2024March 12, 2025 by Kerenza Ryan

My parents didn’t like that I, as the only Kerenza Ryan on social media, wanted to announce to the world that I am schizophrenic. Too big of a risk in my job hunt. I listened at first, changing my name on my profiles to avoid immediately showing up to employers.

But I’ve always wanted to be a writer, and I wasn’t going to stop publishing my pieces. I started in smaller magazines and eventually published a poetry collection called “I Am Schizophrenic.” Talk about obvious.

Jobs aren’t allowed to ask whether or not you are mentally ill. I do remember one, in particular, asking if my “writing” got in the way of my job. That was not a position I was hired for. Another employer later cried about the way I deal with the physical health problems that come with my medication regimen (this while I worked in a doctor’s office, no less).

I was hospitalized twice; both times it affected my work. One boss mistakenly thought I went to rehab and I chose not to correct her—I wasn’t “out” yet. The second boss hadn’t yet read my work, but I told her anyway. She thanked me for sharing my secret. I explained it wasn’t a secret—many people knew. The fact that you could be schizophrenic and have it not be a secret shocked her.

Secret or not, sharing this information has been scary. There is at least one job I think I would have been more likely to get without having published my poetry collection. There is also at least one job I think I got because of the book.

Getting jobs has only been the beginning: I’m also affected once I have one. Sometimes, the boss wants to know what kind of “sick” you are. In that moment, you have to decide whether or not to say “The voices are particularly bad today.”

I don’t want to give the cookie-cutter response “If they don’t want all of me, they don’t deserve any of me,” but I will say this: I work hard. My schizophrenia has made me work hard. When I was so sick that I had the common delusion that nothing was real, including fast food nachos, I still worked at a restaurant where I bagged chip after chip.

As someone who has worked in mental health, I am aware not just personally, but also professionally, how hard it is for people with mental health disabilities to find a job. When the job search is combined with the homelessness, poverty, drug abuse, or simply an increase in medical appointments that goes with having a mental health disability, I watched person after person struggle.

But I have also seen many people get jobs. I’ve even worked at length to help people publish stories about their mental health disabilities. And I tell them it’s a great idea—because it is. For me, I’m not going to change my online presence for the voices in my head or the voices without.

Kerenza Ryan (she/her) is schizophrenic (and doesn’t mind labeling herself as such) as well as having celiac disease and PTSD. She is a kindergarten teacher and a ghostwriter; her work can be found on her website. When not writing or teaching, she enjoys reading, hiking, and lazing around with her girlfriend, something her girlfriend calls “potatoing.”

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Out and Proud at 71: A Retrospective on Queerness and Disability

Posted on April 4, 2024March 12, 2025 by Kathi Wolfe

CONTENT NOTE: ableism

Today, at 71, I’m an out and proud queer, disabled, cisgender woman. I’m also a writer and poet.

I’m open about being legally blind. Tapping my white cane, reading my poetry from text blown up large on my iPad, my low vision is out there for everyone to see. Being low vision is as natural to me as breathing.

Like many of us who came up in a culture steeped in anti-queerness and ableism, I still find myself, from time to time, drowning in moments of shame. I recently found myself apologizing when I saw my eye doctor. “I’m sorry for asking you to dim the lights so I can see the eye chart,” I told the technician.

“You don’t need to apologize,” she said.

Yet, despite these momentary blips of shame, I’m as proud of being a part of the disabled community and disability history as I am of being a part of the queer community and queer history.

But developing pride is far from easy. It takes work. “You get proud by practicing,” the late disabled, queer poet Laura Hershey wrote in her poem of the same name.

I was born disabled. But I didn’t begin to come out and become proud until nearly 50 years ago, in the summer of 1974.

I first learned I was disabled when I was five years old. As long as I said I had some vision (nevermind that it was extremely limited), I could show my face in society. I wouldn’t embarrass my family, scare the neighbors, or frighten strangers.

Being blind was shameful, pathetic—only for beggars hanging out with their tin cups. Except, of course, for the blind musical genius of Ray Charles or Stevie Wonder, who could really sing! Or DeafBlind saint Helen Keller, who’d been “saved” by Annie Sullivan, the miracle worker. (No one ever mentioned that Annie was low vision like me.)

Being a creature of my era I, too, had ableist attitudes towards disability and disabled people for much of my youth. From the time I was a kindergartner—trying to understand why I shouldn’t allow anyone to call me blind—to my early 20s, I was uncomfortable with my own disability and around others with disabilities.

Because I didn’t want to be identified as blind, I didn’t use a cane then, even though I often bumped into walls and sometimes fell down steps. Why did I not get training on how to travel safely—and with self-confidence—with a cane?

But in my junior and senior years of college, I slowly began to feel more comfortable in my skin.

The burgeoning women’s movement (what we now call second wave feminism) began to resonate with me. As a student at a women’s college, I learned that women didn’t have to marry or wear makeup or heels. That we would likely encounter sexism. But we could aim for careers in everything from the arts to medicine and law.

Today I can see what a white, binary version of feminism this was. But it offered liberating possibilities to me and others of my generation, who grew up in a culture of rigid gender and sexual roles. Where a single woman couldn’t get a credit card. A woman who didn’t marry and have kids was considered abnormal (unless she was disabled, of course). And a man would be called “queer” (as a slur) if he cried or liked to cook.

Just a few years after the Stonewall Uprising, I also started to realize (and even enjoy) that I was queer. I’d had feelings that I liked girls since I was 13, but I’d repressed these feelings because “nice” girls weren’t supposed to “like” girls.

But, as I began to hang out with other queer college students, some of whom had marched in Pride parades, I finally began to embrace my sexuality. It would be a while before I had my first same-sex relationship. But I remember watching “The Wizard of Oz” in the late 70s as I held hands with a woman, shortly after I’d come out to myself as queer. I’d never been more happy to see a rainbow!

At this juncture in life, some of my friends and teachers began to nudge me toward at least acknowledging my disability as well, if not outright identifying as disabled. And then I was told about the Perkins School for the Blind in Watertown, a Boston suburb.

I didn’t know what I wanted to do after graduation. But I was ready to live in a city, and I knew I’d need to learn how to safely navigate an urban area. I enrolled in a summer program at Perkins which taught Blind and Low Vision people how to get around safely.

I hadn’t met more than two blind people in my life or crossed a city street alone. I’m not sure which was more terrifying to me: learning to listen to traffic and create an “arc of travel” with my cane or being among a throng of about 50 Blind and Low Vision students and staff.

But I had no idea that this summer would be life-changing.

I began to talk with other Blind and Low Vision people. I discovered that they weren’t “creatures from the Black Lagoon.” Hailing from all over the United States and the world, they were smart, funny and kind. One was a singer who’d performed on talk shows. Another was a baseball fan. Some were cranky. They’d joke about being blind.

We told our stories to each other. I’d often felt that I’d been alone, that I’d been the only one to have been bullied, ridiculed because of my disability. But it turned out that I was far from unique. We’d all been teased, verbally put down, not picked for teams or class offices. Some of us had been beaten up on the playground in elementary school or in the halls of high school.

Gradually, I became aware that there was discrimination against disabled people.

I’d always felt that non-disabled folk didn’t like to be around people like me. But I finally realized that this wasn’t just a “feeling.” Disability-based prejudice was a real thing.

The culmination of my Low Vision coming out process was discovering that people with disabilities have rights. That, though discrimination complaints are quite difficult to win, we can seek legal redress if we encounter disability-based discrimination.

After years of protest, including a historic 1977 sit-in, Section 504 of the 1973 Rehabilitation Act was finally signed in April 1977. Section 504, the precursor to the Americans with Disabilities Act, prohibits hospitals, libraries, schools, courts, and other institutions that receive federal funding from discriminating against disabled people.

Looking back over the half century since that groundbreaking law, how different my life has been from what I expected!

I met, fell in love with and, until her death from cancer, had a long, loving relationship with Anne—the love of my life. Since the early 1990s, I’ve found fulfilling work as a freelance journalist. I’ve written about everything from the role of disabled people in World War II to the hidden history of Helen Keller and an ongoing series for the Washington Blade on people who identify as queer and disabled. I’ve had an essay published in The New York Times, the paper of record. My poem, “Tasting Braille,” has been the Poetry Foundation’s Poem of the Day. I’ve had a wonderful life.

Kathi Wolfe (she/her) is a writer and poet. Wolfe’s commentary and essays have appeared in The New York Times, The Washington Post, The Progressive Media Project, and others. She has been a Rosalynn Carter Mental Health Journalism Fellow, and was awarded a mini-fellowship from the Kaiser Family Foundation and the National Press Foundation to report on assisted suicide and people with disabilities. Wolfe is a longtime contributor to the Washington Blade, the acclaimed LGBTQ+ paper.

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Lewis Capaldi is Taking a Break. Why Can’t I?

Posted on November 16, 2023March 12, 2025 by Gretchen Gales

On June 27th, 2023 Lewis Capaldi officially announced his hiatus from touring, citing “the impact of Tourette Syndrome” as part of his decision, one discussed in his award-winning documentary How I’m Feeling Now. He did not take this decision lightly, empathizing with fans about how disappointing it is to look forward to a tour that’s been postponed—and the costs associated with it.

There’s no doubt that Capaldi loves touring, his fans, and the ability to play music in front of thousands each night. As a fellow Touretter, I’m thrilled that there is both representation of Tourette’s and the need for rest from such an international star. But I most resonate with the final part of his Instagram statement, which apologizes for rest while simultaneously justifying it: “I’m so incredibly sorry to everyone who had planned to come to a show before the end of the year but I need to feel well to perform at the standard you all deserve.”

While I’ve hardly achieved the same elevated status as fellow Touretters like Capaldi, Billie Eilish, Howie Mandel, Steve Wallace, and others, I’ve achieved a lot in my life. I’ve been Key Club President, a foster for kittens, a published writer, musician, and so much more. This confuses people when I do desire rest.

There are days when I can indulge in spontaneous plans. On other days, I need to reschedule advanced ones. It’s all up to my body, which cannot be tamed on a whim. During times of stress it can flare up, waxing and waning as it pleases.

But you were fine yesterday; you’ve pushed through it before, I think, an echo of others’ sentiments when I cancel or postpone plans. It also shapes others’ decisions about whether or not to include me at all. Their explanation is usually, “I didn’t think you’d want to come” or “It would be too stressful for you.”

This leads to shame, guilt, and feeling excluded, just for being in an unruly body; requests to forgo my comfort and embrace pain for the sake of others’ needs are seen as the “right” thing to do. While there are many times wherein I believe in pushing through (if possible), like an important celebration or funeral, it can be stressful on the body if the brain decides it’s a “tic-ier” day. It often results in having to take muscle relaxers, sedatives, and pain relievers to get back to a manageable spot.

Yet I still feel the need to apologize.

Many with Tourette Syndrome are encouraged to push past these difficulties, which is why you don’t often see people disclose their Tourette’s. As a child, my neurologist focused on controlling and eliminating the tics he believed were temporary…and my fault. He blamed chocolate, video games, SpongeBob, anything but a disability. So the masking began—and worked—and continued throughout my childhood and teen years. I was an honor roll student, involved in many service clubs and honor societies. I hung out with friends, pushing through the discomfort for the most part and making up an elaborate excuse when I couldn’t.

I believed my tics were a personal failure…until my late diagnosis at 22, long after my tics “should” have left. I had to confront the fact that rest was not a privilege, yet the guilt of canceling or modifying plans remained.

Like many others in the world, doomscrolling TikTok is a favorite pastime. User Vermin and the Rats (with a green pixie cut I wish I could pull off) confronts me with truths: “Is it possible you tie your sense of self-worth to your productivity and your ability to help others, and that’s why you feel so guilty when you’re not able to be productive and you have to rest? That you’ve been masking your disabilities for so long, that you genuinely don’t know how to gauge what your needs are?”

It’s Just Nerves: Notes on a Disability by Kelly Davio is an essay collection chronicling the author’s experience as a disabled person in the 21st century. She writes, “If you are going to disclose your illness, our culture tells us, you had better do it in a way as to make other people feel gratitude for their own good health, to take advantage of their robust bodies….” My addition? If you disclose your illness, you better be a superhuman of sorts. A gold-winning athlete. A wildly successful musical artist. Even then, you’ll still need to apologize for the need to rest. After all, your exceptionalism is waning, which is unacceptable.

In many programs across the United States, services for disabled students are referred to as ”Exceptional Education.” If you happen to be “gifted” AND disabled, you’re labeled as “Twice Exceptional.” Disability, as mainstream culture understands it, cannot inherently be associated with anything good at all; it must be paired with something to “make” it okay. In this case, being exceptional is the only acceptable way to exist in a disabled body. Don’t believe me? Just look at inspiration porn, or the objectification of disabled people to make able-bodied people feel better about their own lives.

When people respond to me with “That’s okay” or “You’re still such a capable woman” after explaining how my Tourette’s works, I get frustrated. Of course it’s okay. I never said anything about my capabilities. I never apologized for my existence.

It’s hard to correct them outright. I’ve even had to correct myself when I’ve thought or said something similar to people with other disabilities. It’s hardwired into so many brains that disability cannot coincide with anything neutral or good, even if you’ve lived it. The only way out of it is to rest boldly. After all, one of the primary tenets of disability justice is rest. No maybes, buts, ifs, or sorries. Just rest.

To practice, I’ve been typing out and removing apologies from my requests to postpone or skip events. I often still leave them out of fear or guilt, but I’m slowly improving my self-advocacy, simply taking the rest I’m allowed to take. I can no longer feel the need to “make up” for the way I exist “proving” exceptionality.

Gretchen Gales (she/her) writes…a lot. After realizing becoming a veterinarian meant being good at math, she pursued writing and teaching as a career instead. You can find more of her written and artsy stuff at www.writinggales.com.

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A Stake in the Fight: An Activist’s Take on Eco-Ableism

Posted on November 6, 2023October 7, 2025 by Anonymous

I’ve been involved in advocacy on disability and chronic illness-related issues for several years now; my work has taught me important transferable skills. Because I have a deep love for nature and our planet— and since disabled people are disproportionately impacted by climate change —I sometimes ask myself why I’m not using those skills to organize at the intersection of disability and environmental justice.

The unfortunate truth is, everytime I begin to dip my toes into an environmental advocacy space, I’m reminded rather quickly of the reason I haven’t spent much time there. As a disabled person whose access needs don’t always align with the idealized “perfect” eco-friendly lifestyle, I’ve had a few too many interactions with individuals in the environmental activist community that left me feeling misunderstood and unwelcome. I know that I am not alone in this experience.

I believe that living in alignment with our values is important, and for me, that includes being mindful of how my actions impact the earth. I practice eco-friendly habits as much as possible: I thrift almost all of my clothing, I compost, and I’ve made nearly every sustainable swap that one could think of. But as someone living with complex, disabling chronic illness, certain lifestyle changes are not possible for me.

My particular disabilities mean that I cannot simply forego air conditioning in the summer, go vegan, or bike to work. I rely on my car more than I would like to because walking too far can trigger chronic pain. In addition, my weekly immunoglobulin infusions produce an unfortunate amount of plastic waste that is outside of my control.

Some people with disabilities face different barriers than I do to sustainable practices, depending on their needs. I have disabled friends who require plastic straws to drink, and others who rely on pre-packaged foods and single-use items because chronic illness limits their ability to cook. Unfortunately, these kinds of needs and limitations, when asserted in environmentalist spaces, often seem to be met with skepticism, disapproval, or even condemnation.

A few years ago, in a conversation with a local climate organizer, I tried to explain why following a vegan diet is not possible or healthy for everyone. Like many others in the chronic illness community, I’ve endured extended stretches of time during which I could only tolerate a few “safe” foods without scary mast cell activation syndrome reactions. Over the years, I’ve learned that my most consistently safe foods are not plant-based and that I need to give my body whatever nourishment it accepts.

As I explained this to the activist, she asked invasive questions about my medical conditions, expressed disbelief that any chronic illness could make a fully plant-based diet inadvisable, and implied that I was further harming my health by not being vegan. Essentially, someone who barely knew anything about me told me that I was wrong about my own disabled body. I have watched a similar pattern of behavior unfold repeatedly on social media, whenever a disabled person states that a particular eco-friendly change isn’t accessible for them.

I didn’t know until recently that there was a term for this particular brand of disability discrimination that shows up in environmental activism, called “eco-ableism.” Eco-ableism is the result of nondisabled people failing to consider that their proposed solutions to environmental issues can make life inaccessible for disabled people, all while neglecting to recognize the fact that disabled people are some of the most vulnerable to the effects of the climate crisis. In my experience, eco-ableism often also involves a failure by nondisabled people to believe or empathize with disabled people when we speak up about our access needs or the ableism that we’ve encountered.

There are steps that environmental activists can take to prevent eco-ableism and make their spaces more welcoming to disabled people. One of the changes I most hope to see is a shift away from the scrutiny that disabled people are often met with when we assert our needs. Everyone can be a better ally in general to disabled people by trusting that we know our own bodies and access needs better than anyone else can.

Unfortunately, nondisabled skepticism about our access needs is nothing new for the disability community. Many of us know what it’s like to fear that we’ll be harassed for using accessible parking, accused of “faking” if someone sees our legs move in a wheelchair, or judged as “lazy” if we are unable to work.

Activists striving to be anti-ableist in their organizing can avoid perpetuating this exhausting scrutiny by accepting a disabled person’s stated access needs without disbelief, invasive questions, or unsolicited feedback. If a disabled person shares that there is a particular way they need to eat, drink, get around, or take care of their body, the first instinct of fellow advocates should be to believe them.

I’ve also noticed that eco-ableism typically manifests when activists are spending energy analyzing each others’ individual actions, often at a detriment to work on larger systemic issues. To be clear, our individual choices matter; we should all do what is within our abilities to live in alignment with our values. However, irresponsible corporations and government inaction are largely to blame for the climate crisis— not disabled people who need straws to drink.

I hope that, instead of questioning individuals about whether their disability actually prevents them from making a specific sustainable swap, advocates will redirect that energy toward systems change that creates a more just world for all of us. Since climate change has a disproportionate impact on people with disabilities at a systems level, an inflexible focus on individual actions that frames us as the problem ironically only serves to further alienate a marginalized group from advocacy on an issue that we are experiencing most acutely.

Finally, to avoid eco-ableism and ensure that proposed environmental policy changes don’t inadvertently leave any marginalized group of citizens behind, it’s also essential that disabled people play a significant leadership role in shaping environmental movements and policy.

When diverse perspectives are valued and integrated into a movement, the solutions we fight for are solutions that lift up all of us, as opposed to unintentionally creating more obstacles for some. To achieve true equity, not only do we need to make sure that disabled people have seats at the table, but also that our viewpoints are regarded as important and meaningfully incorporated into decision making.

Despite the barriers some disabled people might face to a sustainable lifestyle, disability justice and environmental justice are not in conflict. Rather, they are deeply interconnected, and the disability community has a serious stake in the fight for the future of our planet. Disabled activists also have valuable skills and perspective to bring to environmental advocacy; I’m confident that our involvement will only make the movement stronger. While eco-ableism is discouraging, I’m optimistic about the kind of world we can build when we work together to ensure that all perspectives, abilities, and needs are taken into account.

Anonymous (she/her) is a nonprofit professional and chronic illness advocate based in New England.

About Rooted In Rights

Chronic Inflammatory Response Syndrome: An Unnecessarily Arduous Journey to A Rare Diagnosis

Posted on October 26, 2023March 12, 2025 by Mia Tompson

As I sat in the waiting room of my doctor’s office, a wave of hopelessness washed over me. It was my fourth visit that month; I was beginning to feel desperate and invisible. I’d been experiencing strange symptoms for months—fainting spells, headaches, vertigo, flu-like symptoms, and excessive thirst—and none of the doctors I’d seen could give me a concrete answer.

At the time, I was working at a startup in Baltimore. I chalked it up to too much coffee and too little sleep. Over time, the symptoms got progressively worse. I would go to work having pounded ibuprofen, coffee, and anxiety medication. Because I presented as “normal,” any time that I mentioned needing to rest or take some time to look after my health, everyone from doctors to friends either directly or indirectly told me that I was simply bad at stress management and everything was all in my head.

I felt hopeless. My symptoms were impacting my ability to work and enjoy life, but no one seemed to take me seriously. Doctors would do blood work, note that it all came back normal, and say “Let’s see if things have improved in six months” without prescribing me anything except for occasional nausea or anxiety meds.

Eventually, I quit my stressful startup job, thinking that perhaps my symptoms would go away if I could achieve a better work-life balance. Spoiler alert: they did not. As time went on, I started developing sensitivities to many of my favorite foods and drinks. After eating them, my light-headedness and excessive thirst would increase significantly. I began tracking both my food intake and my symptoms and, after finding a near-perfect correlation between fainting and three different foods and beverages, I went to an allergist. She promptly told me that I’d made it all up and needed to work on my food phobias.

I had to quit two more jobs due to how much my symptoms impacted my ability to work. Last year, things crescendoed. My excessive thirst led me to drink so much water that I was hospitalized for hyponatremia (low blood sodium) and my vertigo and headaches became unbearable. I also began to experience overwhelming brain fog that prevented me from getting anything done or learning anything of substance while working.

After ruling out diabetes, my doctors simply told me to drink less water; the thirst was probably all in my head. I spent hours each day on the phone calling specialist after specialist asking them to see me, following up on test results, having my medical records sent to other facilities, and handling all of the other logistics of seeking treatment for my unidentified illness. I also began diligently documenting every aspect of my daily life. This comprehensive log—detailing what I ate, drank, did, and the symptoms I experienced—became crucial. Before each doctor’s visit, I’d analyze and share key highlights from the data to ensure that I wouldn’t waste time rehashing old details and to preemptively address any simplistic theories they might want to revisit.

I had all but given up when I stumbled upon a health podcast in which the host is told by a specialist that she is demonstrating hallmark symptoms of Chronic Inflammatory Response Syndrome (CIRS). She was the first non-diabetic person who I’d heard mention that she experienced excessive thirst as a symptom and her other symptoms matched mine almost completely. Excitedly, I began googling the condition to learn more, despite having been told over and over by well-meaning but misguided friends, medical care providers, and family that I should avoid self-diagnosing or reading too much about illnesses online. I was tired of letting the “experts” mishandle my health and my life.

I learned that CIRS is a chronic condition that causes inflammation in the brain and can eventually lead to other autoimmune diseases and neurodegenerative disorders. It often develops when someone who is genetically susceptible to the types of molds and bacteria that are prevalent in water-damaged buildings gets exposed to those pathogens. Because CIRS patients are unable to handle that exposure the way that the rest of the population can, they get sicker and sicker unless they get treatment.

Common CIRS symptoms include flu-like symptoms, headaches, brain fog, blurry vision, light-headedness, excessive thirst, and weight gain. If left untreated, the brain gets so inflamed that many begin to experience dementia-like symptoms. Additionally, CIRS can even cause or exacerbate pre-existing anxiety.

I found a specialist who works with Dr. Andrew Heyman, a leading researcher on CIRS. After several weeks of extensive blood work, brain scans, and other testing, the diagnosis was official: I had CIRS. Knowing how serious CIRS is, I am glad that I listened to my gut. I only wish that I had been more insistent that it wasn’t just in my head so that I could’ve received a diagnosis sooner.

Looking back, I realized that my experience is not unique. Disabled individuals often struggle to have our symptoms taken seriously by the medical community. I had to fight for years to get the proper diagnosis and treatment and it was only because I stumbled upon a podcast that I finally found some answers. According to studies by Dr. Heyman, over 20% of the population is genetically susceptible to the disease, although the gene has to be activated by a precipitating event for the individual to develop CIRS. I wonder how many people are silently suffering with the disease that I am now being treated for.

The struggles that disabled individuals face extend beyond the medical community. We also face discrimination in the workplace and in our everyday lives. As someone who experienced CIRS as a result of a water-damaged work and home environment, I feel that it’s important to speak out about workplace and tenant rights and safety as they relate to disabilities.

The repeated dismissals I faced aren’t merely personal grievances; they expose a systemic failing. People with disabilities, chronic illnesses, and other serious medical conditions shouldn’t have to sit on waitlists and fight to be taken seriously when they finally do get to see a doctor. As infuriating as my experience was, my education and majority ethnic identity made it easier for me to rebut doctors’ dismissals, flooding them with data, carefully reasoned arguments, and ultimately demands to be treated better.

A system that prioritizes only those who can advocate for themselves creates barriers for the less privileged and for those with intersecting marginalized identities. Whether inadvertent or by design, the way that the healthcare system works today falls short of respecting human dignity, to the detriment of society. Every individual deserves a voice, care, and understanding. We need more than hope. We need actionable change that ensures every person’s health and well-being is genuinely prioritized.

Mia Tompson (she/her) is a graduate student with a chronic illness. She lives in Boston, and when she is not studying or working, she enjoys baking, photography, and swimming.

About Rooted In Rights

Monsters in the Closet: Facing Fears of Inaccessibility

Posted on October 19, 2023March 12, 2025 by Fifer Charlie Loftus

The portrayal of disability in horror films is often very problematic—think of mental illnesses such as Dissociative Identity Disorder (DID) in the 2016 movie “Split.” Yet, horror movies hold a special allure to me. This could be because my mother has always been opposed to horror, gore, and movie violence in any form—except for distinct comedic effect. However, I think horror movies can hold a certain allure for disabled viewers due to their relatability. Being disabled can be incredibly anxiety-inducing. I find myself constantly in a state of what-if when dealing with aspects of my disability in an inaccessible world:

“What if TSA confiscates my medication? What if the environment there drives me to sensory overload and there’s no way to leave? What if I don’t “look” disabled enough to receive the accommodations I asked for?”

Horror movies often portray disabled people as the horror, but the true horror is the inaccessible world. I remember I hated tag, the default game of every elementary schooler, because I was always caught first. Years later, when watching horror movies I remembered the fear of being the farthest behind like the characters being picked off first by the monster.

In a haunted house horror, the family is tormented by fears and horrors while inside the house; outside of it, their anxiety over what lies inside tends to devour their lives. As long as the environment around us remains inaccessible, people with disabilities are constantly stuck inside the haunted house. Assuming that our home environments are accessible to us, that consolation can be our one reprieve. However, not everyone is that lucky.

Recently, one of my what-if scenarios happened. Since the beginning of the pandemic, I’ve done everything I can to prevent getting COVID-19. I have asthma and a history of lung disease. For many disabled people with similar concerns, the COVID-19 pandemic elicits a seemingly never-ending fear: what if I get COVID? Although vaccinations and new antiviral medications tampered these fears, the reality of a positive COVID test was still a shock.

By December of 2022, I’d made it through almost two full years of negative results. Each time my reactive airway and lungs flared up at an everyday cold, I’d take a test only to be negative. At this point, I did not expect to test positive, yet that second pink line appeared thick and clear. It was undeniable. Although I coughed and wheezed and my chest tightened, ultimately I didn’t need to be hospitalized. This was a feat I owe to vaccinations and modern medicine.

The real horror movie began after COVID, when suddenly my asthma was significantly worse. My pulse oximeter showed my oxygen levels dropping regularly to low 90s, a never-ending cough developed, and I was overtaken by a level of fatigue that I’d never experienced before.

Again, the horror for me was not my symptoms but the inaccessibility I encountered in everyday situations. The steep stairs to my apartment became the equivalent of a long, dark hallway from a suspenseful horror film. I started using a cane to combat the fatigue so that I could make it through my work day. My slow pace and inability to run created an even tighter time crunch, worsened by my ADHD. Everyday household tasks, such as laundry, became impossible as I no longer had the energy or strength to haul it to the laundromat without bending into a coughing fit or asthma attack.

Eventually, I was prescribed cough medicine and a new inhaler that managed to restore my asthma to a controlled state after a few more weeks. However, my asthma did not disappear and COVID-19 lingers.

A coping method I’ve been taught for anxiety is to play out a worse-case scenario. This way you see that even the worst situation your anxiety can throw at you is not world-ending. One therapist explained it to me as “…seeing monsters in the closet makes them less scary. It’s the idea of the unknown that is the most terrifying.” I played out my COVID-19 scenario in real time and, despite the real struggles I faced dealing with the aftermath of the virus, I found ways to accommodate myself, even when facing inaccessibility.

Horror movies push monsters out of the closet. Most horror movies, especially the haunted-house subgenre, end in a tense resolution of the protagonists leaving the haunted area, often with the monster lingering in the background. In “The Shining,” the mother and son manage to get away unharmed, but Jack is left at the hotel, mad and murderous. The threat of fear lingers on, just as the threat of inaccessibility never fully dissipates.

People can develop a disability at any point in their life, even people who already label themselves disabled have fluctuating support needs. These are all themes that linger in the back of horror, often cloaked in offensive stereotypes. I often wonder what horror stories and movies written by disabled people could look like. How would we portray the everyday horrors of inaccessibility? Inspiration porn pities us and stereotypical horror films label us monsters.

However, we are just as human as any nondisabled characters, with flaws and triumphs that make us neither distinctly hero nor villain. Let’s take possession of the real monsters—the world’s accessibility barriers—and bring them out into the harsh daylight alongside the ghosts and demons on television.

Fifer Charlie Loftus (they/he), who goes by Charlie, is a queer disabled writer who lives in New York. He works in a library and enjoys reading, writing, and playing board games in his free time.